Wednesday, October 4, 2017 - MORE Elevated Numbers

Happy Fall Everyone!  We wish we had better news to report but Annabelle's liver numbers all increased slightly this week.  The numbers didn't jump a lot but we are all concerned because they have trended upward the past few weeks.  Monday's bloodwork did show lower EBV (which is good that the lower prednisone last week helped to control the EBV virus within her).  The transplant team is hoping that her elevated liver numbers are just the start of a very mild rejection due to the fact that they weaned her prednisone so quickly over the past few weeks.  So, the course of action for the rest of this week is to boldly increase her prednisone to the level it was when we got discharged 5 weeks ago (we're basically going from 0.8ml twice a day to 3.3ml twice a day which is a big jump).  Hopefully, this boost in steriods will calm the immune system down from attacking her new organ.  We're hoping these steriods will knock it out so there wouldn't be a need for a biopsy. 

In feeding news Annabelle continues to not eat well.  The metabolic dietician here has been working so hard to try to come up with a plan so that Annabelle doesn't have to be on her formula as much during the day.  We're also going to start feeding therapy tomorrow so hopefully we'll get some good pointers for moving forward.  The plus side of steriods is that they often increase hunger so maybe the prednisone will give her an appetite and make her want to eat! 

Otherwise, Annabelle has been her normal, happy self.  We all enjoy our daily walks around the hospital as the weather has been so nice.  Thank you all for your continued prayers and we'll update next week once we get Monday's bloodwork results. 

Prayer Requests:

1.) Continued prayer for the donor's family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Pray that Annabelle's liver numbers would trend back down with the help of the increased prednisone so she would not have to have a biopsy.

4.) Pray that Annabelle's EBV would stay contained despite the increase in steriods.

5.) Pray that Annabelle would have an increased appetite and that her initial feeding therapy session would go well tomorrow.

6.) Pray for Annabelle to continue to gain strength and make huge strides in her physical development.  Pray that Annabelle would start to feel more comfortable with her therapist to where she would be motivated to work during her sessions.

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